Like many newly diagnosed multiple myeloma patients, I was lost, confused and angry for the first few months.
A group of fellow patients and caregivers which met not far from my home in Stillwater, Minnesota, helped change all that.
Led by an outgoing and welcoming gentleman named Karl Vollstedt, this group helped me learn not to fear my cancer. Better yet, they helped me and Pattie learn to laugh again.
Last Wednesday, Pattie and I returned to Stillwater to speak to the group that helped save our lives.
Our visit was incredibly poignant and uplifting. I was introduced by Millennium Pharmaceutical representative Amy Modean. Millennium sponsored our trip, and Amy had been very helpful throughout.
As I looked out over a room full of more than 50 fellow patients and caregivers, I couldn’t help but reflect how far I had come from my first fearful visit four years ago.
Several of the original group members had become dear friends, and most of them were there Wednesday. My dear friends Karl, his now co-leader Barb and fellow blogger Minnesota Don were there. Karl’s wife and caregiver Lorraine, Barb’s husband Fatih and Don’s family were there, too.
So were Gerry and his wife Annie, Steve, Dan, Ardy and a dozen or so other familiar faces.
My good friend and prostate cancer survivor, Gene Kruschek, was also kind enough to stop by and show his support. Gene and I were diagnosed about the same time. Both of us were only given a few months to live at first. Yet here we were–many years later–both alive and well.
There were lots of new friends I had met on my trip, including Mike and Rich–and a number of anxious faces I didn’t recognize. Men and women who all shared one thing in common. They–or someone they loved–had multiple myeloma.
I spoke for about 20 minutes. I could have gone on for hours. I briefly shared my story and talked about my recent stem cell transplant. I answered a few questions, then sat transfixed as I listened to everyone else briefly update the group on how they were doing.
Most of the news was good. Some was disarmingly not. I think I learned more from the others than they did from me.
Two hours flew by. I couldn’t round-up everyone who attended, but here is a picture of many of us, gathered together in the back of the room…
Hey, who’s that masked man, wearing the IMF hat, sitting up front?
This week I’m writing a Myeloma Beacon column about when and where to wear a mask once you’re home, after undergoing a stem cell transplant. Visiting with so many people in a confined space is an obvious time, don’t you think? Check-it-out Thursday afternoon.
I mentioned that I couldn’t get everyone together for the picture. Some were shy or had wandered-off. Three or four had to leave early. But there were several other good friends and members who were unable to attend. I missed Stacy, a young mother who was hospitalized at Mayo Clinic, waiting for a stem cell donor. And what about Kathleen, a recent transplant survivor who was, ironically enough, visiting friends in Florida.
A few were traveling or could not attend, like Dee, Tom and Nancy. Others had died, including my good friends Gene and Jim. Still others had moved away.
In my first book, Living with Multiple Myeloma, I wrote about spending time with another newly diagnosed patient, Karen Wong. Karen and her husband, Tom and I became good friends during those early years. Now no one knows where she is–or if she is alright. Where are you, Karen?
WHEW! It all seems like it was so long ego. So many memories. Visiting with old friends–and making lots of new ones. I would like to thank Millennium for making it possible for me to travel back home to speak to members of the Eau Claire, Wisconsin and Stillwater, Minnesota multiple myeloma support groups. Pattie and I will never forget our extraordinary experience.
Feel good and keep smiling! Pat